Partnering with Patients and Families To Design a Patient

Transcription

INSTITUTE FOR PATIENT- AND FAMILY-CENTERED CARE
6917 Arlington Road, Suite 309 • Bethesda, MD 20814 • Phone: 301-652-0281 • Fax: 301-652-0186 • www.ipfcc.org
Partnering with Patients and Families
To Design a Patient- and Family-Centered
Health Care System
A Roadmap for the Future
A Work in Progress
Jim Conway, Bev Johnson, Susan Edgman-Levitan, Juliette
Schlucter, Dan Ford, Pat Sodomka, & Laurel Simmons
With support from
The Robert Wood Johnson Foundation
June 2006
Institute for Family-Centered Care
7900 Wisconsin Avenue, Suite 405
Bethesda, MD 20815
www.familycenteredcare.org
In collaboration with
Institute for Healthcare Improvement
20 University Road, 7th Floor
Cambridge, MA 02138
www.ihi.org
! 2006
Permission is granted to duplicate material in this paper for educational purposes.
Partnering with Patients and Families To Design a Patient- and Family-Centered
Health Care System: A Roadmap for the Future
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© 10/2010 Institute for Patient- and Family-Centered Care
Table of Contents
Introduction................................................................................................................... 3
Patient- and Family-Centered Care Defined................................................................ 4
Building Momentum for Patient- and Family-Centered Care:
Organizational Support ................................................................................................ 6
Building Momentum for Patient- and Family-Centered Care:
Social Forces for Change ............................................................................................ 11
Collaboration with Patients and Families in Quality Improvement
And Health Care Redesign: What Does It Look Like? How
Do We Know It Works?.............................................................................................. 13
Hospitals ........................................................................................................... 13
Ambulatory Settings .......................................................................................... 18
Professional Education ...................................................................................... 21
Quality Improvement Organizations and Initiatives ........................................... 22
Professional Associations and Disease-Specific Organizations .......................... 24
Patient Safety Organizations .............................................................................. 25
Federal and State Agencies ................................................................................ 27
Factors that Facilitate Collaboration ......................................................................... 28
Barriers to Collaboration............................................................................................ 29
Moving Forward ......................................................................................................... 31
References.................................................................................................................... 33
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Partnering with Patients and Families to Design a Patient- and Family-Centered
Health Care Delivery System: A Roadmap for the Future
Background Paper for June 2nd Meeting
A Work in Progress
Introduction
“Fixing” the problems that plague health care in the United States, most experts now
agree, demands system-wide solutions. The health care system must be redesigned, and
that enormous task must be undertaken collaboratively by all key stakeholders—health
care professionals, administrators, planners and policy makers, and payers, as well as by
patients and their families. Such partnerships must begin with a shared understanding of
the problems, and a shared commitment to work together to solve them. Only then can an
action plan for redesigning the health care system be developed and implemented.
This paper provides background information to facilitate the development of an action
plan to ensure that sustained, meaningful partnerships with patients and families are in
place in hospitals and health systems; in community clinics and other ambulatory
settings; in schools educating the next generation of health care professionals; in national
associations; in federal, state, and community agencies; in foundations and advocacy
organizations; and among payers. The paper was drafted at the request of the Robert
Wood Johnson Foundation in preparation for a one-day invitational meeting convened by
the Institute for Family-Centered Care (IFCC) and the Institute for Healthcare
Improvement (IHI) in Cambridge, Massachusetts on June 2, 2006. The meeting will bring
approximately 25 patient and family advisors together with administrative and clinical
leaders from hospitals and other health care organizations and leaders from foundations
and the IHI.
The goals for the meeting are:
To advance the conversation to develop a shared vision and action plan for
improving health care by advancing the practice of patient- and family-centered care
and creating partnerships with patients and families in all health care settings and
within the organizations and agencies having an impact on health care.
To outline specific action steps and develop recommendations for:
! How to engage and support patients and families and health care professionals
and administrative leaders in working together on quality improvement and the
redesign of health care;
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! How to overcome the barriers to creating and sustaining these partnerships; and
! How to build the evidence, resources, structures, processes, and community to
support and sustain this work.
To build commitment and synergy among participants and their organizations to
advance patient- and family-centered care and to ensure that meaningful and
sustained partnerships are an essential component of quality improvement and the
redesign of health care in the future.
The purpose of this paper is to give meeting participants a common ground and to
facilitate discussions during the June 2nd meeting. It begins by tracing the development
of the term patient- and family-centered care. It then discusses the organizational and
societal forces that have contributed to the current momentum for partnership building.
The next section of the paper illustrates what patient- and family-centered care and
partnerships look like in action; the examples are in some cases accompanied by
evaluation and research findings that document the positive impact of patient- and
family-centered change. The paper then lists a number of factors that experience and
research have confirmed are essential to advancement of patient- and family-centered
care; this is followed by a discussion of common barriers to progress. The paper
concludes with the outline of key components of a plan for moving toward developing an
action plan for building and sustaining partnerships among patients, families, and
professionals in health care to achieve the outcomes of quality care desired by all. This
section will serve as a basis for small-group discussions on June 2nd.
Patient- and Family-Centered Care Defined
Efforts to enhance patient and family partnerships in health care redesign must be based
on a shared understanding of key terms that often come up in the health care literature
and in discussions of quality improvement. Of these terms, none may be as critical as
patient- and family-centered care. A brief history of how this term developed and of the
organizations and individuals that contributed to the definition is therefore a necessary
foundation for informed, productive discussions of engaging patients and families in the
redesign of health care.
Balint and colleagues introduced the term patient-centered medicine in 1969. 1The term
patient-centered care was coined by the Picker Commonwealth Program for PatientCentered Care, subsequently the Picker Institute, in 1988. At that time, this group began
to do research aimed at documenting patients’ needs and preferences in order to
understand the patient’s definition of high quality care. The group also began to explore
models of care that could better address those needs. This research began with qualitative
research aimed at understanding how patients and their families defined the quality of
care in hospitals and, ultimately, across the continuum of care. The Picker
Commonwealth Program for Patient-Centered Care used findings from focus groups and
interviews with patients and families to create survey instruments that measure the
patient’s experience of care. These surveys, conducted by the Picker Institute for health
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care organizations in the United States, Canada, and Europe, measured patients’
experiences in eight dimensions of care: access; respect for patients’ values and
preferences; coordination of care; information, communication, and education; physical
comfort (including help with activities of daily living); emotional support; involvement
of friends and family; and preparation for discharge and transitions in care. In addition to
safe and technically excellent care, these dimensions are deemed to be the most critical
aspects of the care experience by patients and their families.2
In the United States, childbearing women and families helped drive family-centered
changes within maternity care in the 1960s and 1970s. Early in the 1980s, families of
children dependent on technology who were living in hospitals sought to work in a more
collaborative manner with health care professionals and successfully advocated for
legislation that would enable them to care for their children in home and community
settings. In the 1980s, U.S. Surgeon General C. Everett Koop, the Maternal and Child
Health Bureau of the U.S. Department of Health and Human Services, the Association
for the Care of Children’s Health, and other organizations collaborated with families in
defining and providing leadership to advance the practice of family-centered care. These
efforts focused on children with special health care needs in hospitals, in home and
community care, and in public health programs. At the end of the 1980s, these leaders
collaborated with women and families infected and affected by HIV and AIDS and
applied similar principles and strategies to the development of family-centered systems of
care for these patients and their families.3, 4, 5
The term patient- and family-centered care has evolved over the past six years as an
effort to build on the nature of the ideal care experience that the Picker Institute and
others defined and to link this perspective with the concept of collaboration in planning,
implementing, and evaluating systems of care. Patient- and family-centered care places
an emphasis on collaborating with patients and families of all ages, at all levels of care,
and in all health care settings. Further, it acknowledges that families, however they are
defined, are essential to patients’ health and well-being and are allies for quality and
safety within the health care system. 2,6,7It recognizes that the very young; the very old;
and those with chronic conditions— the individuals who are most dependent on hospital
care and the broader health care system— are also those who are most dependent on
families.8,9,10 Family members are more than surrogates to be called on when the patient
is unable to make decisions on their behalf; they are essential members of the care
continuum and care-giving team. It acknowledges the literature that confirms that social
isolation is a health risk factor and hospital and ambulatory care policies and practices
should not separate patients and families in caregiving and decision-making.
The core concepts of patient- and family-centered care are:
• Dignity and Respect. Health care practitioners listen to and honor patient and
family perspectives and choices. Patient and family knowledge, values, beliefs
and cultural backgrounds are incorporated into the planning and delivery of care.
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• Information Sharing. Health care practitioners communicate and share complete
and unbiased information with patients and families in ways that are affirming
and useful. Patients and families receive timely, complete and accurate
information in order to effectively participate in care and decision-making.
• Participation. Patients and families are encouraged and supported in participating
in care and decision-making at the level they choose.
• Collaboration. Patients, families, health care practitioners, and hospital leaders
collaborate in policy and program development, implementation and evaluation;
in health care facility design; and in professional education, as well as in the
delivery of care.11
This definition encompasses and acknowledges the infrastructure needed to create
partnerships and to transform the experience of care and of caregiving for patients, their
families, and for health care providers. Patient- and family-centered care describes the
essential elements necessary to cultivate partnerships at the bedside, in care plan
decision-making, healing relationships, and individual patient/professional interactions.
More broadly, it provides a framework for formal partnerships with patient and family
participation on advisory councils, committees and design teams.
Building Momentum for Patient- and Family-Centered Care: Organizational
Support
In 2001, the Institute of Medicine (IOM) issued a highly influential report entitled
Crossing the Quality Chasm: A New Health System for the 21st Century,12 which analyzes
the problems facing the U.S. health care system and sets forth recommendations for its
improvement. Patient- and family-centered care offers the framework and strategies to
enhance the quality and safety of health care and to make the recommendations in this
report a reality.
For example, in its “Six Quality Aims for Improving Care,” the IOM report defines
patient-centered care as “care that is respectful of and responsive to individual patient
preferences, needs and values, and ensuring that patient values guide all clinical
decisions.” 12(p40) Partnerships among professionals, patients, and families are essential to
such a caregiving process.
The Quality Chasm report also sets forth “10 Rules to Redesign and Improve Care.” 12(p61-62).
All ten rules are consistent with patient- and family-centered approaches. Among the most
relevant are:
Care based in continuous healing relationships. Patients should receive care
whenever they need it and in many forms … [T]he health care system should be
responsive … 24 hours a day, every day … access to care should be provided over the
Internet, by telephone, and by other means in addition to face-to-face visits.
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Customization based on patient needs and values. The system of care should be
designed to meet the most common types of needs, but have the capability to respond
to individual patient choices and preferences.
The patient as the source of control. Patients should be given the necessary
information and the opportunity to exercise the degree of control they choose over
health care decisions ... The health system should … accommodate differences in
patient preferences and encourage shared decision-making.
Shared knowledge and the free flow of information. Patients should have unfettered
access to their own medical information and to clinical knowledge. Clinicians and
patients should communicate effectively and share information.
The need for transparency. The health care system should make information
available to patients and their families that allows them to make informed decisions
when selecting a health plan, hospital, or clinical practice, or choosing among
alternative treatments. This should include information describing the system’s
performance on safety, evidence-based practice, and patient satisfaction.
Patient- and family-centered principles have a key role in the “Chain of Effects for
Improving Healthcare Quality,” a third focus of the Crossing the Quality Chasm report.
The IOM defines four levels of care and sets forth criteria that define quality care at each
level. Collaboration with patients and families and the active participation of patients and
families in care and decision-making are relevant to all four levels of the transformational
change in health care envisaged by the IOM.
At the experience level: Care should be provided in a manner that is respectful,
assures the candid sharing of useful information in an ongoing manner, and supports
and encourages the participation of patients and families. Patients and families can
contribute to the process of gathering information about patient and family
perceptions of care as well as analyzing and responding to collected data.
At the clinical microsystem level: Patients and family advisors should participate as
full members of quality improvement and redesign teams, participating from the
beginning in planning, implementing, and evaluating change. Design of the
experience of care should respect the patient and family, optimize access to that care,
allow for participation, and support and stimulate activation and commitment to
achieving their clinical goals.
At the organizational level: The perspectives and voices of patients and families are
vital to quality improvement, planning, and policy and programmatic development at
the organizational level. Patients and families should participate as full members of
key committees such as patient safety, facility design, quality improvement,
patient/family education, ethics, and research. Patient and family faculty programs
should be an integral part of all schools and clinical programs preparing health
professionals and administrative leaders. Patient and family advisory councils should
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report to senior leadership, patient and family faculty programs should function in a
way that assists academic institutions in achieving their academic mission.
At the environment level: The perspectives of patients and families can inform local,
state, federal, and international agency policy and program development. These
agencies, along with accrediting and licensing bodies, are in a position to set the
expectation and develop reimbursement incentives that encourage and support the
engagement of patients and families in health care decision-making at all levels.
Policies developed and issued by these agencies also affect programs in graduate and
undergraduate schools for the health professions and health care administration. For
these reasons, these agencies are in an excellent position to support initiatives that
build the collaborative skills of patients, families, and health care professionals, and
agency personnel.
The Institute for Family-Centered Care is a non-profit organization that provides leadership
for changes in health care that emphasize communication and relationships and sustained
partnerships with patients and families. The Institute's mission is to advance the
understanding and practice of patient-and family-centered care in all settings where
individuals receive care and support. For more than a decade, the Institute has produced and
disseminated guidance publications, videos, and web-based resources on how to collaborate
with patients and families and apply patient- and family-centered concepts to policies,
programs, facilities, staff practices, and professional education. The Institute also convenes
a biennial international conference and in-depth seminars for interdisciplinary teams that
include patient and family advisors that lead to change in the organizational culture of
hospitals.
IOM recommendations confirm the value of the efforts of private, nonprofit organizations
such as the Institute for Family-Centered Care, the Picker Institute, Planetree, New England
SERVE, Zero to Three, the American Academy of Pediatrics,13 the Society of Pediatric
Nurses and the American Nurses Association, the Association of Maternal and Child
Health Programs, the National Association for Children’s Hospitals and Related
Institutions, Family Voices, the Federation of Children with Special Needs, the
Federation for Children’s Mental Health, and the National Alliance on Mental Illness,
all of which have worked through their respective constituencies for more than a decade to
advance the practice of patient- and family-centered care.
In addition, federal agencies such as the Maternal and Child Health Bureau,14 the
Substance Abuse and Mental Health Services Administration, the Centers for
Medicare & Medicaid Services, and the HIV/AIDS Bureau have been working for many
years to create partnerships with patients and families in building systems of care.
Improvement initiatives within the Department of Defense have likewise focused on
patient- and family-centered change in recent years.
The priority that groups such as the Joint Commission on Accreditation of Healthcare
Organizations (JCAHO), the National Committee for Quality Assurance (NCQA), the
Institute for Healthcare Improvement (IHI), and the American Hospital Association
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(AHA) are giving patient- and family-centered care in their long-term organizational
agendas is validation of the essential role these core concepts play in health care
improvement and design. is encouraging. For example:
• In 2006, JCAHO convened its first patient and family advisory committee and
published a book “Patients as Partners: How to Involve Patients and Families in
Their Own Care.”15
• IHI has made patient- and family-centered care an area of innovation and research
for 2006 and assured that such care is mainstreamed in all major programs,
including the Institute’s 100,000 Lives Campaign, Quality Allies, and Transforming
Care at the Bedside agendas.
• NCQA is creating a patient- and family-centered physician practice recognition
program that will reward medical groups for patient- and family-centered practice
design and interventions.
• In 2004, AHA collaborated with the Institute for Family-Centered Care to produce
and disseminate a Toolkit on Patient- and Family-Centered Care to the chief
executive officer of every hospital in the United States.11 AHA’s McKesson Quest
for Quality Prize recognizes hospitals that have demonstrated the commitment and
exceptional ability to align their efforts in quality, patient safety, and patient- and
family-centeredness.
The Agency for Healthcare Quality and Research (AHRQ) and the Center for
Medicare & Medicaid Services (CMS) have supported the development of the Consumer
Assessment of Healthcare Providers and Systems (CAHPS) surveys which measure the
patient and consumer experience of care across the continuum of care, including health
plans, medical groups, individual physicians, in-center hemodialysis centers, hospitals,
nursing homes, home care services and assisted living facilities. CMS publicly reports data
from many of the CAHPS surveys on its Web site, as do many other sponsors across the
country. The National CAHPS Benchmarking Database also publishes an annual report on
patients’ experiences of care. In addition to these efforts, many business provider coalitions
such as the Massachusetts Health Quality Partnership, the Pacific Business Group on
Health and large payers are publicly reporting these data to help consumers make informed
choices about providers and are incorporating these surveys measures in pay-forperformance programs.
The National Quality Forum’s (NQF) mission is to improve American healthcare through
endorsement of consensus-based national standards for measurement and public reporting
of healthcare performance data that provide meaningful information about whether care is
safe, timely, beneficial, patient-centered, equitable, and efficient. The NQF consensus
approval process involves all stakeholders in the health care system, including patient and
consumer groups. The consumer members have been very active and effective in pushing
the adoption of measures that are publicly reported to consumers and that help them make
informed choices about providers and health care services. NQF consumer members are
also leading the Consumer Disclosure project to help select and standardize publicly
reported measures of quality.
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Professional organizations such as the American College of Physicians and American
Board of Medical Specialties (ABMS) have been engaged in similar pursuits, as have
scores of individual researchers. The ABMS will use a subset of questions from the
CAHPS clinician-group survey as part of its maintenance of certification program for
board-certified physicians in the future.
Patient and family centered care is at the heart of nursing practice. In 2003, the Society of
Pediatric Nurses and the American Nurses Association (SPN/ANA) published FamilyCentered Care: Putting It into Action, The SPN/ANA Guide to Family-Centered Care.16
The Accreditation Council of Graduate Medical Education (ACGME) recognizes that
knowledge of medical science alone is not sufficient for physicians of the future and that
effective communication is essential to quality and safety. In order to work toward that
objective, the ACGME Outcome Project articulates the expectation that residents must
demonstrate competency in the following six areas: patient care, medical knowledge,
practice-based learning and improvement, interpersonal and communication skills,
professionalism, and systems-based practice. All ACGME-accredited residency programs
must demonstrate how their curricula and teaching strategies ensure resident competency
in each of these six areas. Integrating core concepts of patient and family-centered care
and the opportunity to learn from patient and family faculty in residency training
programs is seen as essential in meeting the goals of the Outcome Project. Also by July
2006, all ACGME-accredited residency programs will be required to have individualized
learning plans for residents.
Momentum for patient- and family-centered care crosses national borders. In the United
Kingdom, the National Health Service (NHS) has mandated that there be structures in
place in all NHS hospitals and primary care clinics that support patient and carer (family)
participation in quality-improvement efforts. Patients Accelerating Change is a program in
the United Kingdom bringing patients together with clinicians and managers in hospitals
and primary care settings to transform health care services. The Picker Institute Europe
and the NHS Clinical Governance Support Team are helping prepare and support people
for this collaboration. Across Canada, patients and families are increasingly engaged with
provincial and national efforts to improve quality, with a particular focus on access and
patient safety.
Also on the international level, the World Health Organization launched the World
Alliance for Patient Safety in 2004. Patient and families are at the center of this
international effort to improve patient safety. Patients for Patient Safety, one of six action
areas of the World Alliance, is designed to ensure that the perspectives of patients and
families are a central reference point in shaping this important work.
(http://www.who.int/patientsafety/patients_for_patient/en/).
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Building Momentum for Patient- and Family-Centered Care: Social Forces for
Change
The organizational momentum for patient- and family-centered care described above is
often based on the need to respond to a number of social forces for change that confront
the U.S. health care system. For example, widespread public attention on the incidence
of medical error has fueled a consumer-driven national agenda. The focus on medical
error and patient safety has become a powerful platform for advocacy, partnerships, and
change. Groups such as the Patient and Family Council of the National Patient Safety
Foundation (NPSF), Consumers Advancing Patient Safety (CAPS), Partnerships
for Patient Safety (p4ps), PULSE, and Medically Induced Trauma Support
Services (MITSS), which focus on improving the safety of care, have emerged. Other
groups, such as SorryWorks, are focusing efforts on apology and disclosure.
Technology is a second factor supporting consumer-driven efforts. The advent of the
Internet has greatly increased consumer access to health information. A 2004 paper
from the Pew Internet and American Life Project states that 95 million Internet users
reported that they seek online information about health-related topics, including specific
diseases and conditions, treatments, diet, fitness, and medications.17 Federal agencies
such as the National Institutes of Health and the U.S. Department of Veterans
Affairs are working to ensure that consumers are guided to credible and accurate health
information sites. Projects such as the Markle Foundation’s Personal Health
Technology Initiative and the Robert Wood Johnson Foundation’s Health eTechnology Initiative are focused on enhancing the ability of patients and families to
use personal health records and other health technologies to become active partners with
their health care providers.
Many health care organizations have converted to or are in the process of converting to
electronic medical records. This presents an opportunity to create a charting and
documentation system that supports patient- and family-centered practice rather than
traditional provider-centered practice. Documentation forms and templates need to
capture patient and family priorities, goals, concerns, and observations and assist the
patient and family as well as health care professionals in ensuring consistency and
coordination of care across settings. Portals need to be designed to ease patient (and
family, when appropriate) access to information in the medical record. Patients and
families should be involved in efforts to design electronic documentation systems as
they are at the MCG Health System in Augusta, Georgia and at Partners HealthCare,
Group Health and Kaiser Permanente. (www.mygrouphealth.org, www.kponline.org,
www.patientgateway.org.)
A third force for change is a growing emphasis on health literacy. Consumers cannot be
informed participants in their care if information is provided to them in a format they
cannot understand. Many studies have shown that patients with poor literacy skills
receive less preventive care, have less knowledge about chronic conditions, perform
more poorly at asthma self-care, use health care services at a higher rate, and have
worse outcomes on a variety of measures than do patients with better literacy. Initiatives
that engage patients who are late readers as partners, such as the Patient Safety
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Committee for the Iowa Health System, are beginning to address the issues of health
literacy as well as national initiatives sponsored by the AMA and Pfizer.
The trend toward earlier hospital discharge and expanded home care has stimulated a
need for programs for training and supporting family caregivers. Planning for discharge
should begin well before day of discharge, and patients and families should participate
in the discharge-planning process. Many studies of medical error have indicated that a
large percentage of these errors occur at transition points in the health care delivery
process. Better coordination of discharge planning, supported by ongoing, informed
communications among professionals, patients and families can help overcome such
problems. Increasing attention is being given to the redesign of discharge planning
processes and these efforts need to include patients and families in the planning
processes.
Another factor supporting patient and family partnerships in health care is the
emergence and application of current evidence-based principles in the design of acutecare hospitals, ambulatory facilities, nursing homes, and other facilities, as well as of
individual units. Health administrators, health care providers, and design professionals
today realize that supportive health care facility design is an integral ingredient of
quality care. These leaders recognize that, as Horsburgh has written, one way to
improve design is simply by “listening to … patients—they are critical to designing
spaces that enable patients to heal.”18 There is an unusual amount of activity in health
care facility construction and renovation today. This creates a unique opportunity to
involve patients and families in all stages of the design-planning process. Through
collaborative design planning, health care environments can be created that more
effectively support family presence and participation, support staff in collaborating
within and across disciplines and with patients and families, and promotes safety. The
Center for Health Design’s Pebble Project is promoting this approach in health systems
across the US.19, 20
Remaking American Medicine, a four-part primetime television series intended for
broadcast on PBS in October 2006, has as an overarching theme, patient- and family
centered care. The goals of Remaking American Medicine and its associated outreach
campaign, is to stimulate a national dialogue about the importance of improving
American health care, raise awareness about opportunities for improving the quality of
health care, facilitate the development of local coalitions that will amplify the messages
of the campaign, and encourage Americans to become active participants in their own
care and in transforming the health care system.
Discussions of patient and family partnerships related to underserved communities,
individuals with low literacy, and other at-risk populations often reveal the misperception
that these individuals cannot participate effectively in collaborative endeavors. While
certainly complex, the recently published paper Patient-Centered Care for Underserved
Populations: Definition and Best Practices, prepared for The W. K. Kellogg Foundation,
makes a clear case for the utility, applications, and results.21
All of the work referenced above responds to a growing clarity from patients and families
around the world. The Institute for Healthcare Improvement described patients and
families increasingly expecting 100% of the time to:
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• To be listened to, taken seriously, and respected as a care partner.
o To have my family/care-givers treated the same.
o To participate in decision-making at the level I choose.
• To be always told the truth.
o To have things explained to me fully and clearly.
o To receive an explanation and apology if things go wrong.
• To have information communicated to all my care team.
o To have my care timely and impeccably documented.
o To have these records made available to me if requested.
• To have coordination among all members of the health care team across settings.
• To be supported emotionally as well as physically.
• To receive high quality, safe care.22
These current forces, combined with the foundation for patient- and family-centered
care built over the past quarter century, have led to important advances in a number of
health care settings, most notably in pediatrics, maternity, newborn intensive care,
HIV/AIDS, and children’s mental health. Today, forward-thinking leaders have begun
to apply the concepts that have worked so well in these areas to a wider variety of
settings. Some examples of this progress are cited in the following section.
Collaboration with Patients and Families in Quality Improvement and Health Care
Redesign: What Does It Look Like? How Do We Know It Works?
Hospitals
! The MCG Health System (MCG) in Augusta, Georgia, has been committed to
collaborating with patients and families since 1993, when it began planning for
the construction of a Children’s Medical Center. collaborated with clinicians and
administrative leaders in developing the vision and philosophy for the new
hospital. The Children’s Medical Center has ranked among the highest in
patient/family satisfaction in a national database of comparable hospitals since it
opened in 1998. Since the late 1990s, MCG has been working to integrate patientand family-centered care within the infrastructure of the entire organization, thus
extending it beyond pediatrics. MCG’s senior leaders have made a commitment to
these efforts. Patient- and family-centered values are clearly defined and included
in the organization’s strategic plan. The human resources department ensures that
new staff possess attitudes and skills consistent with patient- and family-centered
care. Behaviors for customer service and for patient- and family-centered care
have been defined, and both sets of behaviors are included in position descriptions
and MCG’s performance-review system.
More than 125 patient and family advisors are currently involved in collaborative
endeavors at MCG. These individuals serve on Health Partners—a patient and
family advisory council for all adult clinical programs, a Family Advisory
Council and a Children’s Advisory Council for the Children’s Medical Center, a
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Patient and Family Advisory Council for the Multiple Sclerosis Clinic, and the
Patient Safety and Medicine Reconciliation Committees. For information about
the MCG Patient and Family Faculty Program and curricular revisions, see page
20 in the professional education section. Patient- and family-centered care has
become the business model for the organization. It has had an impact on each of
MCG’s business metrics, namely, finance, quality, safety, satisfaction, and market
share.
The quality improvement data emerging over the past three years for MCG’s
Neuroscience Center of Excellence adult inpatient unit are as follows:
Patient satisfaction scores rose from the 10th to the 95th percentile.
Length of stay in the neurosurgical unit decreased by 50%.
Medical error rate fell by 62%.
Discharges (volume) increased 15.5%.
The nursing staff vacancy rate fell from 7.5% to 0%, with a waiting list of
five RN’s.
• Positive change in perceptions of the unit by faculty, staff, and house
staff.23, 24
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•
! Pursuing Perfection is an IHI program funded by the Robert Wood Johnson
Foundation to implement the recommendations of the IOM Crossing the Quality
Chasm Report. As a Pursuing Perfection project that aligns with their strategic
plan, Cincinnati Children’s Hospital Medical Center is committed to
advancing the practice of patient-and family-centered care and to improving the
experience of care for patients and families. The Hospital’s senior leadership is
ensuring that there is support for this effort at the organizational level and within
clinical microsystems. Quality improvement has been the driver of
transformational change within this academic medical center’s inpatient and
outpatient programs. Partnering with families occurs on multiple levels: at the
Family Advisory Committee, on quality-improvement teams, on hospital-wide
teams and unit-based committees and task forces. Families are no longer viewed
as visitors, and units are open 24/7. On many units, families are encouraged to be
present for rounds and given choices about how they would like to participate.
These patient- and family-centered rounds are linked with the patient’s discharge
goals. The charge nurse/bedside nurse participate in these rounds and ensure that
discharge goals are printed out daily and available for the patient and family.
Physician orders are written on a laptop in the patient’s room during rounds.
Residents review orders out loud so that everyone, including the patient and
family, can hear them and verify accuracy.
The emerging quality improvement data indicate:
• Patients are being discharged sooner.
• Medical order entry error rates have been reduced from 7%-9% to 1%.
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• Faculty report that patient- and family-centered rounds are a more
effective way to teach.
• Families are involved in decision-making.25
! At Concord Hospital in Concord, NH, an interdisciplinary team that included
patient and family members worked to implement several initiatives consistent
with patient- and family-centered principles within its adult cardiac surgery
program. Two of the changes were the introduction of a collaborative approach to
rounds that involves all disciplines and the creation of a peer support program.
Peer mentors were involved in the development of various aspects of the program.
But the most profound change at Concord Hospital related to the way rounds were
conducted. The cardiac team changed the traditional, practitioner-centered,
physician-led rounds in favor of a nonhierarchical approach that involves all
members of the care team as well as the patient and family. The new approach to
rounds featured a structured way for reviewing the patient’s care over the
previous 24 hours, for planning care for the next 24 hours, and for openly
discussing and tracking any “glitches” in care. The hospital was a recognized in
2002 for Collaborative Rounds with the John M. Eisenberg Award presented by
JCAHO and NQF. Data from the program during this time period showed
remarkable improvements in clinical outcomes, patient satisfaction, and staff
satisfaction.26 Despite positive outcomes, the process changes could not be
sustained.
One reason for Concord’s inability to maintain its momentum may be a failure to
recognize that creating ongoing, sustainable partnerships with patients and
families requires profound changes in organizational culture and leadership
behaviors. Creating such partnerships, experience at this hospital and others has
shown, will initially produce benefits but will also cause tension within the
organization, as individual practitioners adopt the new practices in varying
degrees. Senior leaders must be prepared for this phenomenon. When problems
inevitably arise, they must remain grounded in a shared vision that
interdisciplinary collaboration, combined with partnerships with patients and
families, leads to the best outcomes and to high-quality, safe care.
Support from midlevel managers is also key for developing and sustaining the
changes in processes that undergird change in organizational culture. Managers
must be given opportunities to learn to lead in an empowering way that enables
exploration and reflection, rather than mandate and "education." Changes in
practices related to communication and coordination of care, for example, usually
require that staff acquire new skill sets. An organization must be willing to
provide its staff members and teams time and support not only for training but
also for reflective practice.
Finally, introducing and sustaining culture change involves sequential power
shifts. This shift must begin within traditional practitioner hierarchies, then
gradually expand to include patients and families. Clinical teams may need to
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learn how to collaborate across and within disciplines before they can collaborate
effectively with patients and families.
! Maine Medical Center in Portland is a 606-bed community teaching hospital
serving the entire state of Maine and northern New England. Enhancing
communication within the organization and between the hospital and the
communities it serves is a priority for Maine Medical Center. In 2004, the
Strategic Initiative Alignment Team that included a family advisor developed a
white paper on patient- and family-centered care and submitted it to senior
administration. As a result of this document, advancing the practice of patientand family-centered care has been integrated within the hospital’s patient safety
work. It is now a central focus of the hospital’s three-year strategic plan, entitled
Safe Patient- and Family-Centered Care: A Partnership of Patients, Families,
and Caregivers. The hospital has a Patient and Family Advisory Council for adult
health care and a similar council for the Barbara Bush Children’s Hospital.
Pilot projects were initiated in six specific clinical areas. Efforts are now
underway to spread best practices and lessons learned. The Volunteer Services
Department is collaborating with clinical and administrative leaders to recruit,
train, and support patient and family advisors to serve on teams for specific
clinical areas. Progress and the tracking of outcomes are built into the strategic
planning process and are monitored by hospital senior leadership.
! In 1997, Dana-Farber Cancer Institute (DFCI), Brigham and Women's
Hospital, and Massachusetts General Hospital combined their adult oncology
programs to create the Dana Farber/Partners CancerCare Program. As one of the
initial activities, patients and families were asked to envision the ideal experience
for cancer care. They also participated in the development of tools to measure
patient perceptions of and satisfaction with care and in efforts to improve patient
safety at DFCI after a tragic chemotherapy overdose.
Since that time, patients and families have taken on increasingly responsible roles
in all aspects of DFCI planning and program development. DFCI now has both an
Adult and a Pediatric Patient and Family Advisory Council. Among the Councils’
many accomplishments are the following:
• Revamped the process by which patients are admitted to and move
•
•
•
•
•
through the Emergency Department.
Established a central office and support staff to support the councils and a
phone line, for patients and families to access the Council.
Worked on passage of the Massachusetts Pediatric Palliative Care Bill.
Worked to reduce waiting times in clinics and infusion.
Developed an end-of-treatment transition program in pediatric oncology
which has been widely implemented and is now being expanded to adult
care.
Participated in the planning of renovations for all inpatient, ambulatory,
radiology, and radiation therapy areas.
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• Published articles in Inside the Institute, the hospital bi-weekly newsletter,
and Side by Side, the quarterly newsletters by patients and families for
patients and families and the hospital community.
• Rounding on inpatient and outpatient care units.
• Participated in the implementation of a family participation in rescue
events policy.
In addition to their work on the two central councils, members contribute to
decision-making and planning processes at DFCI in numerous other ways. At
least one Council member participates on almost every management and
operating committee at the Institute. As a result, Council members have the
opportunity to gain firsthand familiarity with DFCI’s broad scope of operations.
For example, the Council chair serves on DFCI’s Clinical Operations Working
Committee and the Clinical Operations Group. The Council Chair also is a
member of the Clinical Operations Leadership Team of the DanaFarber/Brigham and Women’s Cancer Center. Other members of the Council
serve on the Joint Quality Improvement/Risk Management Committee (the Board
of Trustees Quality Committee), the Patient Safety Committee, the Zakim Center
for Integrative Therapies Executive Committee, the Diversity Committee, and the
Art and the Environment Committee, as well as other ad-hoc and ongoing task
forces and committees.
DFCI has successfully navigated through a 10-year period of enormous transition,
change, and growth. At all levels of the institute, patient- and family-centered care
is considered a key factor in this overall success and specifically enabling: high
levels of ambulatory patient satisfaction, very low levels of medication error,
consistent and dramatic volume increases, and high levels of staff satisfaction.
! In 2002, the University of Washington Medical Center in Seattle made a longterm commitment to advance the practice of patient- and family-centered care. A
high-level Patient- and Family-Centered Steering Committee was appointed; the
work of this group is overseen at the executive level by the Chief Nursing Officer.
Following initial training and technical support on how to create partnerships with
patients and families, the Medical Center created Patient and Family Advisory
Councils for three clinical areas—Rehabilitation, Oncology, and Perinatal Care.
! Across the United States, there are very few quality-improvement committees and
councils that involve childbearing women and families in improving maternity
care. The Birth Center at United Hospital in St. Paul, Minnesota is a notable
exception. The Birth Center has had a Family Advisory Council since 1997.
Council members participated in the redesign of obstetrical services at United
Hospital. They consolidated parent education materials into a single manual. They
made recommendations for grief support for families who had experienced a
perinatal loss. A parent was appointed to the Perinatal Loss Committee. The
Council recently collaborated with the John Nasseff Heart Hospital Advisory
Council on women’s heart health issues and intergenerational health issues,
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bringing women’s perspectives and ideas to these important public health
concerns.
! Boston Medical Center serves a diverse population in an urban community. In
the 1990s, with leadership from the Pediatrics Department, a Parents as Partners
Program was created to provide a centralized structure to advance the practice of
family-centered care and to support the involvement of families in the
Department’s quality-improvement efforts for the Department. Improving
outcomes and patient/family satisfaction were goals for this work. A staff liaison
position was created at the departmental level, and a member of the community
whose children received care in the hospital was appointed to it. Parents became
involved in advisory roles and helped develop and staff a variety of innovative
programs. Parent advisors tackled issues such as reducing the number of unkept
appointments, developing programs to encourage father involvement in their
children’s health care and development, and enhancing family-centered, culturally
competent communication skills for medical students and residents.
Despite this initial success, the central, department-wide coordination was
eliminated in 2002 because of fiscal pressures. Since that time there has been no
central coordinator and no unified means for recruiting, training, and supporting
family advisors. Each clinical area within pediatrics is responsible for taking on
this responsibility individually. Since the disbanding of the central program,
patient satisfaction scores, which increased dramatically following the
introduction of the centralized program, have fallen. Experiences at other similar
institutions indicate that the absence of the central coordinator may be a key
reason for this discouraging loss of momentum. Having a designated staff liaison
for collaborative endeavors facilitates the ongoing, effective participation of
patient and family advisors. Such a position is particularly important for
organizations serving diverse communities which may have less experience in
participating in quality improvement work.
Ambulatory Settings
! Partnering with patients, families, and clinicians is an essential component of all
initiatives at the John D. Stoeckle Center for Primary Care Innovation at
Massachusetts General Hospital. It is a central theme of its innovation,
education, and research activities. The Center’s Advisory Board has four seats
dedicated to primary care patients: two representing adult practices and two
representing pediatric practices. Plans are under way to create a Patient and
Family Advisory Council in each of the Center’s primary care practices,
beginning with patient involvement in the design of pilot projects and work
related to the design of the Ambulatory Practice of the Future (APF).
Patients and families have participated in the development and piloting of
innovative approaches to primary care such as:
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Dissemination of the “Foundation for Informed Medical Decision Making”
decision support videotapes to primary care patients through the use of
electronic reminders and e-prescriptions. The tapes are e-prescribed by the
primary care clinician and then mailed to patients’ homes by staff of the
Blum Patient and Family Resource Center.
•
Pre-Visit Preparation and Medication Reconciliation: Dissemination of previsit preparation forms and a list of the patient’s current medications for
updating as part of the primary care appointment reminder letters.
The Center’s general seminars and its APF seminars focus on topics where patient
and family involvement is critical. Patients and family members often work with
professional faculty in presenting and facilitating these seminars. Seminar topics
have included health literacy, e-mail communication with clinicians, the use of
interpreters for non–English-speaking primary care patients, a chronic disease
management model for patients with diabetes, and applying universal design
principles to improve the physical environment for patients, staff, and clinicians.
The theme for the Center’s APF seminars is effective methods of partnering with
patients and families. These seminars are focusing on such topics as ways to create
effective patient and family advisory councils and effective methods of involving
patients in collaborative self-management programs. The Center is involved in
teaching about patient- and family-centered care and shared decision-making in the
Harvard Medical School “Doctor-Patient III” course and in its program for MDMBA’s.
! The mission of the Center for Medical Home Improvement (CMHI), at the
Crotched Mountain Foundation in Greenfield, New Hampshire, is to establish and
support networks of parent/professional teams to improve the quality of primary
care medical homes for children and youth with special health care needs and
their families. A medical home is a process of care offered by primary care
providers in partnership with families of children with special health care needs.
CMHI’s model for change and improvement is one of practice-based quality
improvement. It blends parent insight, professional knowledge, and planned care
to build primary care medical homes.
The following results emerging from this collaborative approach to quality
improvement are based on surveys of 83 families before and two years after
medical home improvement:
• The number of families with written care plans doubled.
• Hospital stays and hospital days were significantly reduced. Prior to
beginning the medical home improvement process, 9% of children had
between 4 and 10 stays in a year; two years later, only 1% of children had
that range of hospital stays.
• Family focus groups and surveys increased by 30%.
• Parents’ worries about their child’s health were cut in half.
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• School absences were reduced by more than half.27
The CMHI Web site has practical assessments and resources for providers in
community practices and families serving on quality improvement teams,
including the Medical Home Improvement Kit with measurements, strategies, and
“A Guide for Parent and Practice “Partners Working to Build Medical Homes for
Children with Special Health Care Needs,” can be downloaded from this site
(http://www.medicalhomeimprovement.org).
! The medical home concept has been embraced by both the American College of
Physicians, which brings internal medicine physicians into the rethinking of
primary care practice through its initiative called The Advanced Medical Home
(http://www.acponline.org/hpp/adv_med.pdf), and the American Academy of
Family Physicians, which in its Future of Family Medicine report
(http://www.futurefamilymed.org/index.html) advocates for a "new model" of
care based on patient-centered care provided through a medical home. These
initiatives build on the pediatric experience with medical home as well as on the
chronic care model. As internal medicine and family medicine clinicians seek to
improve approaches to health care delivery, they will benefit from the active
involvement of patients and families in the development of their practice redesign
efforts.
! The mission of the National Center for Cultural Competence (NCCC) in
Washington D.C is to increase the capacity of health and mental health programs
to design implement, and evaluate culturally and linguistically competent service
delivery systems. It has developed cultural and linguistic competency selfassessment tools for organizations and similar assessment tools for health care
practitioners. Is Your Youth with Special Health Care Needs Prepared to Partner
with the Medical Home? is a recent NCCC publication available on its Web site
http://gucchd.georgetown.edu/nccc/documents/TransitionArticle.pdf. An article
on youth as advisors will be available in the near future.
NCCC is working with the Bureau of Primary Health Care (BPHC) to assist
BPHC and its funded programs (Community Health Centers, Migrant Health
Centers, Health Care for the Homeless grantees, Healthy Schools, Healthy
Communities grantees, Health Care for Residents of Public Housing grantees,
Primary Care Associations and Primary Care Offices) to provide high quality
primary health care services that are culturally and linguistically competent and
that reflect the principles of patient- and family-centered care.
! The Commonwealth Fund devoted millions of dollars to the
Picker/Commonwealth Program and to the Picker Institute. It has recently
launched a Patient-Centered Primary Care initiative, which presents another
opportunity to involve patients and families in the planning, implementation, and
evaluation of new approaches to primary care
(http://www.cmwf.org/programs/programs_list.htm?attrib_id=11936).
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Professional Education
! Since 1999, faculty from the University of Pennsylvania School of Medicine
have partnered with patients and families who serve as teachers dedicated to
shaping the practice of future physicians. This work evolved from the familycentered initiatives at the Children’s Hospital of Philadelphia that began in
1992. Parents whose children are cared for at The Children’s Hospital of
Philadelphia are guest Family Faculty for a “Doctoring 101” course. The
curriculum and format were created by the Family Faculty. The semester-long,
required course explores topics such as delivering difficult news, critical
conversations, living with illness and disability, and death and dying. In this
powerful forum, medical students have a unique opportunity to understand illness
from the perspective of patients and families.
! The University of Pennsylvania School of Nursing has likewise made efforts to
include patient and family as faculty. Families of chronically ill patients from The
Children’s Hospital of Philadelphia share a long partnership with faculty at the
University of Pennsylvania School of Nursing, both in the undergraduate and
graduate programs. Family leaders share the podium with nursing school faculty,
teaching about patient- and family-centered care, collaborative care models,
communication at the bedside, and therapeutic relationships. A family consultant
teaches an annual family-centered care seminar to advanced-practice nursing
students at the University of Pennsylvania which is simulcast to advancedpractice nursing students at St. Jude Hospital in Memphis, Tennessee. Feedback
from nursing students indicates these family-led seminars have the greatest impact
of all the education opportunities they experience. Family leaders have also
partnered with nursing faculty to co-author articles in publications such as
Pediatric Nursing on family-centered topics including, family as faculty,
therapeutic relationships, the language of labeling patients and families, and
establishing safe, effective, family-centered partnerships at the bedside. Family
leaders have co-presented with nursing school faculty on these topics at national
nursing leadership forums.28, 29
! The MCG Health System and the Medical College of Georgia in Augusta are
integrating patient- and family-centered care in the five schools within the Health
Sciences University and its clinical sites. The first step was the creation of a
Patient and Family Faculty Program. Twenty-eight patient and family faculty
were recruited and trained for teaching in a variety of venues in the nursing
school, medical school, and schools of allied health. A directory is available to
faculty that lists the patient and family faculty and presents brief summaries of
their experience and topics they can speak on. MCG is conducting a
comprehensive assessment of how patient- and family-centered care is integrated
in all levels of the curriculum. Patient or family advisors are included in the
search processes for academic department chairs. The expectation to further the
understanding and practice of patient- and family-centered care is included in
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faculty employment contracts. The Medical College of Georgia has recently
created the Center for Patient- and Family-Centered Care to further the research
agenda.
! A parent advisor is an integral, decision-making member of the team that
interviews candidates and chooses candidates for residencies in
obstetrics/gynecology at the University of Washington Medical Center. All
first-year residents spend time during orientation with Patient and Family
Advisory Council members. Families developed resource materials to assist the
medical students and residents in developing communication skills. The first
efforts were so successful that now, at residents’ request, family advisors meet
with residents during their second year to review and to enhance their ability to
communicate effectively with families.
! Patients living with a life-threatening illness are teachers of first-year medical
students at Harvard Medical School. Students learn to elicit and value the
patient’s perspective; they learn about the power of listening, about the kinds of
supports that help patients and families manage illness, about the experience of
illness and treatment from the patient and family.30
Quality Improvement Organizations and Initiatives
! As noted earlier in this report, the Center for Medical Home Improvement is
using quality-improvement methodology and partnerships with patients and
families, physicians, and office staff to transform primary care practices. This
work is happening in communities and in statewide and national collaboratives.
Other quality improvement activities are described below.
! The National Initiative for Children’s Health Care Quality (NICHQ) is now
involving families in a number of its quality improvement endeavors. One of its
current programmatic areas is providing seamless, evidence-based, familycentered care for children with chronic conditions.
! The Robert Wood Johnson Foundation funded IHI to lead a three-year national
initiative called Quality Allies: Improving Care by Engaging Patients. This
project, also supported in part by the California HealthCare Foundation, is
focused on improving the capacity of individuals with chronic conditions, their
families, and ambulatory care providers to engage in collaborative selfmanagement. Collaborative self-management support is the care and
encouragement provided to people with chronic conditions to help them
understand their central role in managing their illness, make informed decisions
about care, and engage in healthy behaviors. The leadership team includes
representatives from Rush Medical College, the John H. Stroger Hospital of
Cook County, the MacColl Institute, the Institute for Healthcare
Communication, the Institute for Family-Centered Care, and the White
Mountain Research Associates. Twenty ambulatory practices from across the
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nation were selected to participate. Patients with chronic conditions and their
families have been active participants in the development and implementation of
this project, serving on the national advisory board, as faculty, and as members of
each of the 20 teams. The request for proposals to participate in this innovation
community stated that each team must include patients and families as full
members. Patients and families are participating in the development of an online
community for patients, families, providers, and community agencies. For more
information see the program site at
http://www.ihi.org/IHI/Programs/QualityAllies/QualityAllies.htm.
! Since 1995, the Vermont Oxford Network (VON), an international organization
devoted to improving the quality and safety of newborn intensive care (NIC), has
sponsored a series of quality improvement collaboratives. VON began exploring
family-centered newborn intensive care in 1998, and since that time has integrated
it within its collaboratives. In the NIC/Q 2000 collaborative, families assisted in
the development of the project’s evaluation tools, participated in site visits,
attended collaborative meetings, and spoke at national meetings. In NIC/Q 2002,
families’ perspectives helped guide the development of a Web-based resource on
evidence-based, family-centered newborn intensive care for providers and family
advisors. A family member served as a consultant to the collaborative and was
invited to serve as a co-investigator on a study on patient safety funded by the
Agency for Healthcare Research and Quality. In the current initiative, 12
newborn intensive care units (NICUs) are participating in an improvement project
titled “Your Ideal NICU,” and at least one parent serves on the quality
improvement team for each center. In addition to participating in the
collaborative, these parents are actively involved in their units as advisors. They
perform a variety of roles, including leading family advisory groups, coordinating
and providing peer-to-peer support, developing family resource centers, providing
training for physicians and staff, and training and mentoring other family
advisors.
! As a grantee in the IHI Pursuing Perfection initiative 2001-2006 (see page 13),
Whatcom County brought together the community practices and programs
(Family Care Network North Cascade Cardiology, the Center for Senior
Health, and SeaMar Community Health Center) with St. Joseph Hospital of
the PeaceHealth System, to be a “learning lab” for the implementation of IOM
Crossing the Quality Chasm recommendations. The centerpiece of the Whatcom
County Pursuing Perfection initiative is the Shared Care Plan, a Web-based tool
that facilitates communication between patients, families, and their health care
team members. Neither a medical record nor a substitute for such a record, the
Shared Care Plan is instead a personal health record with a link to the medical
record that aids in medication reconciliation. The Plan is accessible to all
members of a participating patient’s team at the discretion of the patient. The plan
provides a user-friendly way for patients to share information with their Care
Teams to help manage their chronic conditions and promote the flow of
information. A sample Shared Care Plan can be viewed at
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http://www.sharedcareplan.org. Patients and families had a key role in designing
the Shared Care Plan. As a result, the Plan responds to a major concern commonly
voiced during the planning meetings. As one family member put it, “The
electronic medical record is fine, but it doesn’t solve the problem. It doesn’t help
me manage my chronic condition, when I have more than one doctor or
organization involved in that care.”
Discussions revealed that patients and families wanted, among other things, a
record that captured a broad range of information—information that would follow
them across settings: clinical information was just the start. For example, they
emphasized the importance of including in the plan other key pieces of patient
data, such as information on living conditions, dietary restrictions, spirituality,
and preferred learning styles. Families wanted the tool to answer the question,
“What are the things about me as a person that are important to know?” The
Shared Care Plan is an example of how patient and family involvement can be
instrumental in the development of tools that solve complex and often-intractable
problems such as coordination of care.
Professional Associations and Disease-Specific Organizations
! Advances in clinical care have resulted in improvements in life expectancy and
quality of life for people with CF. Despite these successes, much work remains to
be done.
The mission of the Cystic Fibrosis Foundation is to ensure the development of
the means to cure and control CF and to improve the quality of life for patients
with the disease. The Foundation’s investments in research, drug discovery, and
drug development are paving the way for future progress. The Foundation is also
committed to a vision of exemplary care at all of its care centers in order to extend
the quality and length of life for people affected by this disease.
In its newly adopted strategic plan, the CF Foundation articulates the belief that
strong partnerships among patients, families, and care providers are essential to
achieving optimal outcomes for patients with chronic conditions such as CF.
Such partnerships will make it possible to customize care to the needs and
preferences of patients with CF and will catalyze the incorporation of selfmanagement strategies and promote patients’ adherence to their medical
regimens. To truly deliver patient- and family-centered care, the CF Foundation
believes that it must incorporate the perspectives of people with CF and their
families in all its work.
A patient served on the planning group that initiated the process of developing a
strategic plan for quality improvement for CF patients. A patient co-chairs the
People with CF and Family Task Force, which is developing tools for patients
and families to use to work with the Foundation’s centers for quality
improvement.
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Incorporating people with CF and their families into the improvement work is a
priority focus of the Foundation’s current Learning and Leadership
Collaborative IV. The poster session for this collaborative featured all the ways
that CF Centers have created structures to support the involvement of patients
and families in quality improvement and health care redesign. To launch a new
Family Advisory Council, the Connecticut CF Center planning a brainstorming
session on “Barriers to Perfect Care.” From the ideas generated by families, an
agenda for change was developed. At Johns Hopkins CF Center, an adult patient
is helping to redesign clinic processes to minimize the risk of infection. Because
of the risk of infection, he is involving other patient advisors in this initiative
through email.
! The American Academy of Orthopaedic Surgeons (AAOS) has made a
commitment to create a culture of patient-centered care in the organization and in
individual orthopaedic practices. AAOS defines patient-centered care as “the
provision of safe, effective, and timely musculoskeletal care achieved through
cooperation among the orthopaedic surgeon, an informed and respected patient
(and family) and a coordinated health care team.” As part of a campaign, “Getting
Better Together” Through Patient-Centered Care, AAOS has developed a set of
tools and resources for its membership. It has asked each member to sign a pledge
for how he or she will work with patients and families and that members display
this pledge in their offices. A goal of the AAOS’s Communications Skills
Mentoring Program, which has been under way for the past few years, is that
residents in all 150 orthopaedic residency training programs nationwide undergo
an AAOS course in Patient-Centered Communication by 2008, and that 25% of
AAOS members also complete the course by that time. AAOS will do patient
satisfaction surveys before and after participation in the training and will track the
effectiveness of the training in various ways. Additional research projects are
planned. The former president of AAOS summarizes the work, “We’re doing this
together. We’re a partnership. We’re a team. When we have that attitude, I think
that the outcomes are better from both perspectives; both the physician and the
patient.”
Patient Safety Organization
! The National Patient Safety Foundation (NPSF) was founded to promote safer
medical care through the prevention of medical error and to improve the health
care system for all patients. Collaboration with patients and families is an
essential element in NPSF’s work.
In 2001, the NPSF established a Patient and Family Advisory Council that
included 11 patient and family members and nine health care professionals from
the board of the Foundation. The purpose of the Council is to provide guidance
and patient and family perspectives on all of NPSF’s activities. The Council
created the National Agenda for Action: Patients and Families in Patient Safety—
Nothing About Me, Without Me to disseminate the Council’s recommended
strategy for developing a patient- and family-centered culture of care in which
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patient safety can be optimized. This document is a call to action to all hospitals,
health systems, and national and local health care organizations to involve
patients and families in systems improvement and patient safety programs. In
developing this document, the Council solicited input and review from hospitalbased patient and family advisory groups and various health care organizations.
In 2006, as a part of a restructuring of its governance, the NPSF transformed the
Patient and Family Advisory Council into a Patient and Family Program
Committee with many of the same members, as well as others with expertise that
will be critical to achieving and sustaining effective partnerships with patients and
families across the health care system, such as cultural competence, health
literacy, and patient and family-centered care. This committee will guide NPSF’s
work to partner with patients and families. Patients and families are members of
the NPSF Board of Directors and the Board of Governors.
In addition to these activities, NPSF has supported the work of the WHO Patients
for Patient Safety Initiative and similar activities being led by JCAHO. It has
included a workshops and presentations on strategies to involve patients and
families in safety initiatives at its annual Congress for years.
! Consumers Advancing Patient Safety (CAPS) is a consumer-led nonprofit
organization formed to be a collective voice for individuals, families, and healers
who wish to prevent harm in healthcare encounters through partnership and
collaboration. CAPS envisions a partnership between consumers and providers to
create global healthcare systems that are safe, compassionate, and just.
CAPS is partnering in a variety of ways including:
• Partnering for Patient Empowerment through Community Awareness
(PPECA) is a collaboration among patient safety advocates, health sciences
librarians, health care institutions, and public libraries. During the first half of
2005, several informational sessions were held at public libraries throughout
Northern Illinois to raise awareness and educate consumers on patient safety
issues. PPECA was developed in collaboration with Consumers Advancing
Patient Safety, the Health Learning Center of Northwestern Memorial
Hospital, Zipperer Project Management, and the Metropolitan Library.
• CAPS continues to expand its international consumer base through
partnerships with the World Health Organization (WHO), the International
Alliance for Patient Organizations, and other global patient organizations to
develop the world’s richest and largest body of consumer patient safety
knowledge to contribute to global initiatives in patient safety research,
solutions, reporting and other campaigns;
• CAPS has partnered with Midwest Airlines and Aurora Healthcare Systems
on a community-based safety and medication use program focused on senior
healthcare consumers.
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• The Physician Mutual Insurance Company has invited CAPS to join them
as faculty on their OB Collaborative and other initiatives to contribute
consumer wisdom and input on patient safety issues.
! Parents of Infants and Children with Kernicterus (PICK) formed in 2000 with
the intention of partnering with the healthcare system to work together in the
eradication of kernicterus through both a healthcare systems- based approach in
conjunction with a parent education campaign. PICK created the KPPC
(Kernicterus Prevention Partnership Campaign), a partnership of agencies and
organizations including PICK, JCAHO, CDC, HRSA, AAP, NIH, Harvard
School of Public Health, March of Dimes, AWHONN, NANN, AHRQ, AHA,
P4PS, and others that are working together on a public education campaign. The
focus of the campaign is to educate parents of the potential dangers of jaundice
and to empower and activate parents to partner with their pediatrician/provider
and to participate in the safety of their newborn.
PICK’s work in collaboration with a variety of agencies and organizations has resulted in:
• JCAHO issuing 2 sentinel event alerts on the prevention of kernicterus;
• AAP issuing their revised guidelines for jaundice management in 2004;
• CDC’s issuance of the MMWR on kernicterus, a jaundice alert sheet, a
congressional briefing on kernicterus and granting of funds dedicated to
researching the underlying causes of the reemergence of kernicterus as well as
the creation of a public education campaign;
• NQF including kernicterus or bilirubin levels of 30 mg/dcl or greater as a
“never event”;
• HRSA grants to fund focus groups with expecting parents to craft messaging
for a kernicterus public education campaign; and,
• The Hospital Corporation of America’s adoption of a universal predischarge bilirubin test for all newborns.
Federal and State Agencies
Several federal agencies have a longstanding commitment to collaboration with
individuals with chronic conditions and their families. Among those whose progress
has been particularly notable are the Children with Special Health Care Needs
Division of the Maternal and Child Health Bureau of the Department of Health and
Human Services (DHHS), the Center for Mental Health Services (CMHS) of the
Substance Abuse and Mental Health Services Administration (SAMHSA), the
Department of Education and its Office of Special Education and Rehabilitative
Services (OSERS), and the National Institute on Disability and Rehabilitation
Research (NIDRR). In describing how the principles reflected in a patient- and
family-centered approach to care can best be integrated into the culture of federal and
state agencies, Dr. Bernard Arons, former Director of CMHS, said, “Families must be
part of the grant development process, implementation, and proposal review. In order
to build skills [for this collaboration], CMHS funds state and local family networks
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27
with a strong component of family-to-family support. Many of the networks are led
by families.31
Factors that Facilitate Collaboration
As a result of the growing experiences of organizations such as those described in the
previous section, health researchers, administrators, and planners, as well as health
professionals, patients, and families, now have a much better understanding of the factors
that facilitate the development of successful, sustainable partnerships with patients and
families. Experience in a variety of health care organizations—hospitals, communitybased practices, professional organizations, state and federal agencies—has shown that
the following factors facilitate the development and sustainability of partnerships.
• Having senior leaders who are knowledgeable about and committed to
•
•
•
•
•
•
•
•
•
•
•
collaboration with patients and families.
Designating a staff member, with patient- and family-centered knowledge and
skills to serve as a liaison for collaborative endeavors.
Creating a variety of ways for patients and families to serve as advisors within an
organization and ensuring that they can contribute meaningfully to decisionmaking—that their presence is not merely tokenism.
Recruiting patients and families continually for various terms of service to
support sustainability and ensuring that these individuals represent the diversity of
the community served.
Investing in orientation and training in patient- and family-centered care and in
strategies for effective collaboration for patients, families, staff, and physicians.
Investing in educational and planning activities for patients, families, physicians,
and staff to engage in together in order to develop trusting relationships and
understanding of shared and differing perspectives.
Supporting the development of patient and family leaders.
Providing staff and physicians with ongoing support and mentoring to address
challenges related to collaborating with patients and families as they arise.
Understanding that patient- and family-centered care is cost-effective—that initial
investments in training are modest and will be quickly repaid in terms of
increased family and patient satisfaction, improved staff satisfaction and retention
rates, and greater market share.
Ensuring that everyone involved realize that moving toward patient- and familycentered care is a process and that they trust this process and one another.
Measuring outcomes.
Celebrating accomplishments and rewarding efforts.
Lessons Learned from the Field
The experiences of Concord Hospital and Boston Medical Center (see pages 14 and
17) provide instructive examples concerning the importance of cultural change and the
29
28
need for centralized leadership that may be useful to other organizations. Other examples
of valuable lessons learned are summarized here.
The Alberta Heritage Foundation for Medical Research (AHFMR) in Canada
established the Health Technology Assessment (HTA) program to investigate the impact
of health technology on the health care system. HTA has a history of engaging funders,
government agencies, manufacturers, health care professionals, insurance agencies, and
others in its work. Through its partnership with international colleagues, HTA decided in
2005 to explore ways to increase the involvement of consumers as critical stakeholders
for health technologies.
One outcome of that work is an HTA paper, published in December 2005, which reviews
the literature and analyzes barriers to and opportunities for consumer involvement in
health care technology.32 Barriers cited in the paper include time constraints, the need to
find consumers with appropriate time and expertise, and insufficient resources to provide
reimbursement and training for consumers. Strategies for increasing opportunities include
involving consumers on projects with longer timeframes, widening literature searches to
include articles expressing consumers’ views, identifying consumers in the early stages of
projects, and working with other programs within AHFMR to increase overall capacity to
involve consumers.
Growing experience in working collaboratively with patients and families has also
clarified the types of individuals who can contribute most in their advisory roles. Patients
and families, like health care professionals, need training for advisory roles. Many health
care facilities have found the following criteria useful in guiding the selection of patient
and family advisors to participate in collaborative quality improvement and redesign
initiatives.
•
•
•
•
•
•
The ability to share personal experiences in ways that others can learn from them.
The ability to see the bigger picture.
An interest in more than one issue.
The ability to speak candidly in a group.
The ability to listen and hear other points of view.
The ability to connect with people.
Barriers to Collaboration
Despite the success of individual efforts such as those described above and the growing
diversity of settings in which patient- and family-centered care has been introduced,
comprehensive integration of patient- and family-centered concepts in policies,
programs, and practices remains the exception rather than the rule. Most advances
continue to take place in pediatric and maternity units and in acute-care hospitals.
Extension across clinical areas, practices, or organizations remains limited.
30
29
Research and experience reveal a number of common barriers to the implementation of
partnerships and to advancing the practice of patient- and family-centered care. Among
them are the following:
Attitudinal Barriers
• Fear that patients’ and families’ suggestions will be unreasonable.
• Fear that patients and families will compromise confidentiality.
• Belief that a customer service program is sufficient to ensure patient satisfaction
and involvement.
• Perception that there is a lack of evidence for patient- and family-centered
practices .
• Belief that patient- and family-centered care is not necessary (“We are
knowledgeable, caring professionals. We know what’s best for our patients. We
are all patients.”)
• Belief that patient- and family-centered care is time-consuming and costly
resources.
• Belief that their patients are too poor, too violent, too uneducated, too humble to
be engaged or to engage.
Educational Barriers
• Lack of understanding and skills for collaboration on the part of health care
professionals and administrators as well as of patients and families.
• Leaders’ lack of understanding of patient- and family-centered and its benefits.
• Organizations unprepared to provide patient and family members with the training
and support needed to participate effectively in collaborative endeavors.
Organizational Barriers
• Lack of guiding vision.
• Tendency to implement either a top-down approach to initiating partnerships with
insufficient effort put in to building staff commitment, or the tendency to
implement a grass-roots effort that lacks leadership, commitment and support.
• Organizational culture.
• Scarce fiscal resources and competing priorities.
• Inadequate organizational leadership.
Moving Forward
The preceding sections of this paper have laid the foundation for this final section.
Outlined here are a series of 13 questions that participants in the June 2nd meeting
explored in small-group sessions. The questions are applicable to the full range of
organizations, agencies, and institutions involved in health planning, delivery, and
evaluation as well as reimbursement. Drawing on their varied and extensive training and
experience in health care, as well as ideas sparked by this paper, participants were asked
to develop a set of recommendations in response to each question. The recommendations
will be based on the group’s shared vision of patient- and family-centered care and will
31
30
demonstrate how health care professionals, administrators, researchers, payers, and
patients and families can move forward as partners to achieve that vision.
• How can we ensure that every hospital has designed structures and processes that
ensure the development of effective and sustained partnerships with patients and
families to enhance quality, safety, and the experience of care? (Both civilian and
military hospitals).
Recommendations to be developed at the June 2nd meeting:
• How can we ensure that every ambulatory setting has designed structures and
processes in place that ensure the development of effective and sustained
partnerships with patients and families to enhance quality, safety, and the
experience of care?
• How can patient- and family-centered concepts be fully integrated in the learning
environments and the curriculum for medical schools, residency programs, and
schools of nursing and allied health?
• How can patient- and family-centered concepts be fully integrated in the learning
environments and the curriculum for graduate education programs and
fellowships in health administration?
• How can we best stimulate and develop an evaluation and research agenda to
systematically measure the outcomes related to patient- and family-centered care
and inform practice?
• How can payers and accrediting and licensing organizations encourage, support,
and set the expectation for effective partnerships with patients and families that
enhance quality, safety, and the experience of care?
• How can professional associations and disease-specific organizations facilitate the
practice of patient- and family-centered care and the creation of partnerships with
patients and families?
32
31
• How can quality-improvement professionals and organization partner more
effectively with patients and families? How specifically can IHI partner in the
100,000 Lives Campaign?
• How can organizations concerned primarily about patient safety most effectively
create partnerships among patients, families, and health care professionals?
• What do patient and family advisors and leaders want and need to participate
meaningfully in quality improvement and in the redesign of health care?
• What strategies will best overcome the barriers to partnerships in health care
settings, facilitate patient- and family-centered care, and ensure the development
of effective, sustained partnerships in all health care settings and academic
programs?
• What are the most effective strategies to obtain resources to support this work?
• How can foundations and federal and state agencies further the development of
effective, sustained partnerships with patients and families in health care?
33
32
Resources
For the most recent references on this topic, please see the Leadership and Organization Change in the
References
Institute’s Compendium of Bibliographies at http://www.familycenteredcare.org/advance/supporting.html
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34
© 06/2006; revised 01/2009
Institute
Family-Centered
Care Care
© 10/2010
Institute for
for Patientand Family-Centered

Partnering with Patients and Families To Design a Patient

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